Chemo #3 and more than you want to know about me

Today was my third chemo. As you could probably tell from yesterday, I was not looking forward to it. I feel like I need to psych myself up because it certainly isn’t going to get any easier. 3 down, 13 to go.

We have a good thing going as far as treatment day – one of our wonderful friends is taking Fletcher during the day so he is in heaven playing with his friends all day and looks forward to Tuesdays. Evelyn goes over to hang out with dad and they have super fun adventures and she gets a nap. Mom comes and picks me up and gets the full experience with me. The nurses learned quickly that I watch Grey’s Anatomy every week and are all excited to see what episodes I’m watching. I’m on season 4.

Today we got settled in and I was in the front part of the infusion center. The center is set up like a big L and there are three nurses stations so the nurse you get dictates where you sit. My first session was in the semi-private rooms which are in the corner and down the far wall. The second session was all the way in the back which was out in the open, but not very busy. Today was front and center, right in the middle of the action. In all three sessions, the only person I’ve seen getting treatment who was remotely close to my age was during the first session. Otherwise, the youngest people are usually in their 50’s or so and they are with their parents who are getting the treatments. It is strange because sometimes I see the surprise when people realize I am not a visitor. It hasn’t been the patients – I think they all realize it can hit anyone. It’s the people who are younger, the visitors, who think it can’t happen to them. For the most part everyone take it in stride, it’s just my own self consciousness I think.

So we first discussed the side effects. This is where you are going to most likely learn more than you want to know about me. But I’m writing this for me, so if you want to skip it that’s all good. If you want to learn more about what actually happens, keep reading. From what I can tell, we ain’t seen nothin’ yet.

CBC – my blood work came back this week and I know things aren’t nearly where they are going to get, but I’ve taken a hit for the first time. Between weeks 1 and 2, my counts stayed pretty stable. Platelets dropped a bit, but not bad. Also, my absolute neutrophils took a punch dropping from the mid 3’s to the low 2’s. The neutrophils are the white blood cells that fight off bacteria and infection. They are still considered to be good and can go down to 0.8. This week I knew I felt it more so I wasn’t surprised to see some changes. I don’t know exactly what all these levels mean like I know I will – but I can tell you what I know. My white blood cell count went from the low 6’s to the low 4’s. I know white blood cells fight infection, but I also know the chemo is going to knock them out. My red blood cells dropped too – I am now mildly anemic. Red blood cells carry oxygen around the body, so less cells mean less oxygen which means less energy. My hemoglobin (the protein in red blood cells that carriess oxygen) and hematocrit (% of red blood cells in the blood) are also low. That makes sense with the anemia I guess – and that is what is making me feel so crappy. The scary thing is this is mild anemia – it is going to get a lot worse. The nurse told us there are several things they can do if my counts get too bad – there are medications, they can reduce my meds for a week or take a week off from treatment if needed. We are just going to see how this goes. Nothing to do but get on the horse and ride it out.

Skin – the other day I had an itch on my forearm. I thought nothing about it and scratched. The top layer of skin came off like confetti. Literally just flew all over the place. I knew my skin would get dry but it was bizarre. The nurse told me today that the top layers of my skin would start doing that. All of the quickly replenishing cells in my body are going to do that. I know it’s going to happen, but it’s just crazy to see it. I’ve also gotten some eczema spots and am trying to combat them. I’m using the Lemongrass Spa lotions that some of you were nice enough to send me. I’m very sensitive to chemicals, especially during this treatment so I can’t use lotions from most main stream manufacturers. Even companies that say their products are natural put a shocking amount of chemicals in their products. Basically, if you read the ingredients and don’t know what something is, I probably can’t use it.

The stitch – you may remember after my surgery I talked about a spot I thought might have been a pimple but it was hurting a lot (like a piece of glass in there). We determined that it is definitely a stitch. Apparently it is the corner stitch that gets knotted to secure the port (there are at least 4 knots but the others didn’t bother me). It will dissolve, but the knots take longer to dissolve and obviously aren’t flat like the regular stitches. There is nothing wrong with it, I just have really sensitive skin and it is being a pain (literally). I do think it’s getting better though.

Shoulder pain – my shoulder has been better. The massage last week helped a lot and I’ve been putting arnica gel on it which always helps. I’m not sure why I didn’t think about that earlier but I now have a good supply and am putting it on every day.

Mouth Sores – I have had one spot pop up over the weekend. It’s on the roof of my mouth right behind my two front teeth. It started like a blister but no longer feels like it has fluid in it and is just a tender spot. Doesn’t really hurt and will hopefully go away without feeling too bad. 70% of the immune system is in your digestive tract. So expect lots of disruption from mouth sores to reflux and all kinds of excitement in the bowels. I’m doing a teeth brushing ritual that would make any dentist proud, taking L-Lysine and using a baking soda rinse to change the PH in my mouth. This is a reminder that I need to be vigilant.

Poop – Sorry folks, but poop is a part of life. And with everything that is effecting my immune system, it’s definitely a part of mine that demands attention. I’ve been lucky so far that I haven’t had any diarrhea or constipation – especially the former since that can be life threatening to chemo patients. Death by diarrhea, that would suck. But here comes the poop talk – this week I noticed that my normal stool has been laced with something else. I couldn’t tell what it was, mucus was the only thing I could think. When I told the nurse, she said that it’s the lining of my intestines. How insane is that? I am literally pooping away my defenses. She said it’s just like the skin – I’m pretty much shedding all of my body coatings, the things that protect me on the outside as well as in. I started taking probiotics this past week. They are strong and enteric coated so they make it down to my intestines. I just have to hope they help.

Hair – as I’m sure you’ve noticed, things are starting to fall apart on my body quite literally. So far my hair has been okay, but I know it’s the next thing to go. It’s been exactly 2 weeks since my first treatment and this is when it usually starts. I’m just waiting.

I think that’s it for side effects this week. Fun, huh? The biggest thing for me is the fatigue. I really feel okay as long as I can sit and not do anything. I know I need to get out and at least start some regular walks to get my energy up, but honestly I just want to rest. The meal train has been great because the thought of preparing food isn’t good, along with not having the energy to do it. Plus I get to visit with friends which gives me something to look forward to. Again, as long as I can sit I am good and love the opportunity to talk to people. Eric and my parents have been awesome. They take such great care of me and the kids which I know can’t be easy all the time.

This week is going to be rough. When I was telling the nurse about how hard it hit me, she said that sometimes the 4th treatment is like the 2nd rather than being as bad as the 3rd so we could hope for that. Then we reminded her that this is my 3rd and she just made a face that was kind of like “ouch”. So apparently the 3rd is really bad. We talked a bit, but she didn’t really elaborate other than it’s bad. So it sounds like we need to brace for impact on Thursday and Friday. I keep hearing a line from Chappelle’s Show in my head – brake yo’self fool! Some of you I’m sure will know what I’m talking about, and those that don’t can google or just enjoy the voices in my head.

After going over all the side effects, we got started. She accessed the port which still make me all nervous. I took some lavender for aromatherapy to help me relax. I think it helped. We used the spray and it was pretty good going in, but is sore for a while after it’s secured. We got blood right away today so I was glad to not have to worry about clots. My medications got changed again so she had to send the orders to the pharmacy and we waited for the new meds. Last week we had to do this and it took 3 hours so we were happy that today it only took about an hour. I told her I am a pee-er so she didn’t start the saline until she had to which helped me not get up 10 times during treatment. The nurse did tell me that the IV pole is named Javier, in the context of taking him to the bathroom with me. How funny is that? She said that the potty runs are really specific to the individual because I had noticed that a lot of times I’m the only one getitng up. But today I wasn’t alone – the woman across from me and I took turns. I got the same meds I did last week, but they changed the Benedryl to a push instead of IV. So basically this means that I got it injected from a syringe into the IV rather than from a bag where it is diluted in saline. She stood there for a while and tried to give it slowly, but holy crap. That stuff hit me like a ton of bricks. I was glad I made the potty run first because I’m pretty sure I would have hit the floor if I tried to stand. Just turning my head made me dizzy. Usually mom and I go by the store on the way home because we invariably get a list of things to buy during the side effect discussion with the nurse, but today I couldn’t do that. Just get me to the bed.

When we got home, I ate some cinnamon raisin toast which seemed to have no taste. Then I got in bed and slept until 6:00. I still feel exhausted but at least I got some good sleep. Hopefully I will feel better tomorrow.

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4 Responses to Chemo #3 and more than you want to know about me

  1. Jill Breheny says:

    Hi Jenn, thank you for sharing so much– It is so good to hear how you are doing–all of it. I truly appreciate you and your open-ness.
    On the subject of Iron and Anemia (my two cents):
    I run anemic and have been severely anemic and the best iron supplement on the market is Floradix in liquid form. You can find it at Vitamin Cottage or Whole Foods and once it is opened, you want to keep it in the frig so it stays fresh. Other iron supplements cause constipation and don’t absorb well. Floradix is amazing. (Sold in a box with herbs on it and lots of orange on the box). Here is a link in case you want to read up on it:

  2. Steve C says:

    3 down, 13 to go. Stay strong friend. Here’s a thought… maybe you’ll get EPO and you can share any extras with me the next time I have a huge bike ride :–) (EPO is what the cyclists dope with)
    3 down 13 to go and if this was “one of the bad doses” then you’re done with one.
    I love your hair, but love your hair stories more.
    We miss you and I say a prayer for you every morning.
    Hang tough sista, you WILL DO THIS!!!!!!!!!!!!
    Peace and power, Steve

  3. Christina Cullinane says:

    Thinking of you every day! Love, hugs and rest to you. XXOO

  4. Heidi Leist says:

    Hello Jenn,
    My dear friend Jill Breheny shared the link to your blog with me. And after reading your posts I just wanted to tell you how incredibly strong and amazing you are. Your blog will not only serve as an outlet for you but also be a blessing for others going through similar battles. You are in our prayers and thoughts – keep up the great work on your path to healing.
    Very sincerely yours,
    Heidi Leist, Lemongrass Spa Products Founder

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